Wolf-Hirshhorn Syndrome is the result of partial deletion of the short arm of chromosome 4, resulting in various physical and mental conditions.
Has anyone else with a WHS child had chronic sinus issues?
Hi Eric thank you for your lovely message! I am spending the weekend with my Host Family (a family that look after me to give my own family some respite). I enjoy staying with them, I stay one weekend every month with them and I have been staying with the same Host Family for the past 11 years. Keep in touch. From Brady
Hi Brady! We are so glad that you have joined our site and we hope to have more joining you shortly. I have a brother named Ryan who is 19 and a sister that is 22 named Alison.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
I have Wolf-Hirschorn Syndrome.
I go to a special school, I am a happy person with a magnet of a personality!! Everyone loves me and...
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.